The 16th Family Conference on Cerebral Palsy and Developmental
Disabilities was a roaring success. Held October 24th and 25th
in Portland, nearly 150 parents, self-advocates, vendors, presenters,
and staff came together for two days of speakers, workshops, and
connections. The vendors were “generous with their time” and a
Our keynote speaker; Julie Keon shared “Ten Pearls of Wisdom
Gained in Ten Years” with the group. One mom wrote “it was a great
opening topic…allowed me to connect, feel accepted, and that I was
among friends who share my struggle.” Another said that Julie’s words
went “straight to my heart.”
In addition, there were 14 workshops on such topics as
Low & High Tech Communication; Adaptive Play/Recreation;
Custom Orthotics; K Plan; Treatments for CP; Sibling Support; and
the usuals: Parents Panel; Growing Up with CP.
Here are some remarks from Julie’s afternoon workshop on
“how to stay resilient for the long haul”: “we have to make self-care
a priority, without making it an added stress”; “it takes a metropolis
to raise a child with medical fragility”; “we take 28,000 breaths a day;
if shallow, our body thinks we’re in an emergency”. She really focused
on the importance of deep breathing.
The Family Support Conference is held bi-annually (every other year).
Plans are already underway for our October 2016 conference.
If you missed this year’s, you want to be sure to attend the next one.
What a great 15th UCP Family Conference! Participants reported feeling a sense of connection and community, and said that they learned a great deal as well.
Our keynote speaker, Gregg Mozgala, set the tone for "community". If you have yet to learn about Gregg Mozgala and his work with Tamar Rogoff, watch the Today Show story here.
During their work together, Gregg and Tamar shot over 300 hours of film, and then obtained funding through Kickstarter to turn the footage into a movie. We were fortunate that Gregg was able to bring a rough cut of the movie to the conference, which we showed on Friday night.
The conference also featured 15 workshops with interesting and informative topics, such as spasticity management, healthy sexuality, blended diets, employment, transition to adulthood, music therapy, and much, much more.
What does “community” mean? And where do you find it? These were some of the questions posed by Gregg Mozgala, the keynote speaker at our 15th UCP Family Conference, which was held on November 2nd in Portland.
As someone who has been fully included throughout his life, Gregg pondered where he would find the “disabled community” of which he is ostensibly a part. He found it within the conference setting, where parents, self-advocates and professionals came together for two days to connect, learn and be inspired.
Gregg started a production company a few months ago dedicated to “producing full-length plays about the disabled experience” in New York City, where he lives. The name of the company, The Apothetae, was also the name of a place in ancient Greece where children born with disabilities or deformities were left to die – left to be exposed to the elements. Gregg chose this name for his company with the intention of exposing the world to the experiences of the disabled.
Want to find out more about Gregg and his vision? Visit the "NEWS" section of Gregg’s website here, where you can read a story about community that he did not have time to share at the conference.
At the conference, Gregg and the other participants were able to make new connections and find hope and possibilities for the future. Now that the conference is over, you can still make connections through parent support groups, family outings, and email and Facebook exchanges. Find out more about UCP's family support services here.
What does community mean to you and your family? Let’s keep talking…
We’ve been fortunate that every time we put on a Family Conference, we have an exciting Keynote to share with everyone. This year is no different. Gregg Mozgala will be the Keynote Speaker at the 2012 UCP Family Support Conference, which will be held November 2-3, 2012 at the Sheraton Portland Airport Hotel.
Gregg has cerebral palsy, and is an actor and writer. He's made national press recently because of his work with Tamar Rogoff, a dance choreographer. Tamar first saw him acting in a production of “Romeo & Juliet," Tamar wanted to work with him, even though she knew nothing about cerebral palsy.
Ten months later, Gregg’s posture and walking had changed, and Tamar put him in a 90 minute dance production. Learn about Gregg and Tamar’s work together and see a clip from the performance here.
While working with Tamar, Gregg felt his Achilles tendon for the first time. He also discovered that his old "pigeon toe" walk was now a thing of the past. His feet straightened and, today, he walks upright and straight.
Gregg and Tamar have raised funding to put the 300 hours of film of their work together into a movie for therapists, families, and adults to learn from their experiences.
All we’ve ever heard is that CP cannot be changed, but here we have a young man who experiences cerebral palsy, in his 30’s, whose body and gait have been changed through work with someone who knew nothing about CP.
We hope you will save the date and plan to join us.